Debate of the Week: Middletown Centre for Autism

The Middletown Centre for Autism is a cross-border initiative.

Nearly 15 years ago the North/South Ministerial Council (NSMC) finalised the decision to set up the body – a “Centre of Excellence for Children with Autistic Spectrum Disorders” – which is based in Armagh and opened in 2007.

Autism is a significant and growing issue in Northern Ireland and there is political consensus about a lack of provision generally. Middletown was this week the subject of a debate at the House on the Hill.

The starting point was a Private Members’ Motion tabled by Barry McElduff, Catherine Seeley and Jennifer McCann, all of Sinn Fein. Mr McElduff took to the floor and begged to move:

That this Assembly is deeply concerned by the failure to provide residential assessments and therapies at the Middletown Centre for Autism; believes that this represents a setback for autism services across the island of Ireland; and calls on the Minister of Education to work with his Executive colleagues and the Minister for Education and Skills to evaluate the development of the Middletown Centre for Autism, to renew their commitment to the original priorities of the Middletown Centre for Autism and ensure that all services are fully funded.

He praised the centre for the educational services it provides to children – its “key objective” – as well as the training programmes it offers to parents and professionals.

The MLA noted Middletown’s high ratings in inspection reports and questioned why it appears to be shifting its focus away from residential services and towards outreach.

Debate

Lord Morrow, of the DUP, questioned whether Middletown was an appropriate location for such a facility when it should be “more central and accessible to the population, rather than on the edge of the border”.

Ulster Unionist Sandra Overend asked why autism services were in worse condition five years after the Autism Act than they were at the time it was passed, noting that one major area of concern was that diagnoses are not early enough for families to make the most of support and advice that is available.

“At the beginning of 2016, it was reported that, in the Belfast Trust area, where autism is most prevalent, children are waiting up to 20 months to receive a diagnosis. That equates roughly to just under two full school years… it is recommended that a child should wait no more than 13 weeks for diagnosis… in the Northern Trust, by August 2016, 58% of children on the waiting list had been waiting for 13 weeks or longer. This was even after the Minister of Health had announced a £2 million investment in autism, which had been available to trusts since 1 April 2016.”

She pointed out that much of the problem relates to the fact that future estimates of need “are… completely inaccurate”, noting that rates of diagnosis have quadrupled since 2002, while another issue is the fact that Middletown is funded on a 50:50 basis with Dublin means Stormont does not have sole control of decision making.

The SDLP’s Justin McNulty praised the centre but questioned the need for the motion, saying that Middletown was initially seen as a centre with residential placement but that “thinking has moved on” regarding best practice, and that all evidence now points towards its new models as the way to go.

And so on

Alliance’s Trevor Lunn said he had “various” problems with the motion and that the only bit he could agree with regarded ensuring funding. He said the centre is doing excellent work with its current model and the only change that should be considered is extra support.

The DUP’s Phillip Logan said he agreed with Mr Lunn, and that “the centre's data shows that, up to April 2016, almost 15,000 parents and 17,000 professionals in the Republic of Ireland and 4,500 parents and almost 20,000 professionals in Northern Ireland attended the centre's training events, which are held in venues across both countries.”

Sinn Fein’s Jennifer McCann said the motion is seeking to add to what is happening at Middletown and was “not saying that its direction is wrong”.

Pam Cameron, of the DUP, said she was “conscious that there is a lack of evidence to support the need for, or the implied success of, any proposed residential facility.”

Mrs Barton said she was concerned about the “minimal provision” in the Programme for Government regarding special needs, and that it is also crucial to consider partnerships with allied health professionals when thinking about best-possible provision for autism.

Kellie Armstrong, Alliance, said she is fully behind better overall provision for people and families affected by autism, and she is also fully behind Middletown’s current approach, but noted that there are occasions when residential services are useful and she does not believe they should be dismissed entirely.

Green Party leader Steven Agnew said he had heard no evidence that supports a reconfiguration of Middletown’s services, and its model seems in line with current thinking across a range of health issues.

The Minister

Peter Weir, the Education Minister, welcomed the debate and while he disagreed with the motion he appreciated “that the motivation behind it is very genuine and sincere in trying to focus on the particular way forward for Middletown.”

He acknowledged wider concerns about local autism provision but noted that Middletown itself is very highly regarded and, while there might be times when residential services are productive, the shift in focus for the centre has yielded great results, reflected in two extremely positive inspections in 2012 and again in 2016.

“It is unfortunate that the proposers of the motion appear to have missed those positive reports and focused instead on the lack of residential assessment, perceiving that to be a setback to autism services. I do not believe that that is the case. We are all aware of the background; I have dealt with it.

“The outreach service is fundamentally the same assessment and support service for children with autism as was originally intended. It provides the assessment, therapies and education plan to meet the individual needs of the child. However, significantly, it is delivered in the child’s home and school setting for up to three school terms, instead of residentially at the Middletown centre.

“In fact, the service is having a wide-ranging positive impact not just on the referred pupils but on teachers, parents, siblings and other members of the family and, indeed, other children with autism who attend that child’s school.

“It is difficult to see that outstanding provision as a setback for autism, considering that those wider-reaching impacts would never have been achieved if we had simply gone down the residential route.”

Mr McElduff had also asked the minister to comment on ‘Broken Promises’, a joint report from the National Autistic Society (NAS) and Autism NI, with Mr Weir responding: “There has been a great deal of criticism, particularly of the diagnostic side of things. Delivery for probably the majority of 'Broken Promises' lies with the Department of Health, which leads on autism, but I am very encouraged by the level of engagement across the Executive with Autism NI and the National Autistic Society NI.

“It has not been just me. I know that the Health Minister, the First Minister and the deputy First Minister have recently met representatives of those organisations. There is a determination to try to resolve the issues. As we move through the mandate, we will be contributing to the ongoing autism strategy, the lead for which again lies with another Department.”

The motion was, by leave, withdrawn.